Yesterday terrible, horrible neurologist appointment, to the point husband exploded 3mins 10seconds, any longer neurologist would of been dragged over table.
Why; Arrogant Horrible Text Book Neurologist could not understand why my husband was not in vegetative state, blatantly stated: the past 19months my husband been home waste of time with rehabilitation and any hopes we have will not be accomplished because he has hole in his brain. He even said no such thing as Fatigue in my husband's case it's been seizures all along. This text book neurologist that appears had agenda prior to seeing us, even writing letter based on icy, cut short, exploded appointment saying all health professionals aware of our situation has been negligence. It's been 28hrs digesting this after nursing, home rehabilitation, caring for husband and two children on my own for 19months.
I wasn't listened too, I couldn't speak as over rided with eye rolling with this horrible neurologist talking over me repeating like I was dumb saying 'He has hole in his brain, he can't do anything he won't be able to do anything.
I haven't come across one person in similar situation I have been searching who has been left, forgotten due to covid , it seems unthinkable and now even unimaginable to NHS when they were the ones that abandoned us, and left me to be my husband's doctor, nurse, speech and language therapist, occupational therapist, psychologist, carer, wife and mother solo with absent home visits doing home rehabilitation on my own and never in 19months have I recieved physical support, I haven't received support. The only light now Headway contacted me last week, we're on waiting list and today I have a F You attitude.
I'm just venting, think I've kept brief just needed to get off.
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Sounds horrible NB. Can you talk to the Headway helpline, and also ask for a second opinion? Why did you have this appointment booked? I didn't find the two neurologists I saw to be particularly warm people though.
So sorry to hear you had to go through that, on top of everything else. Big hug to you.
The neurologist I saw could have also easily been nominated for biggest twit of the year award. He actually misquoted what I said to him and it made me sound like I was looney toons. This is, unfortunately, not uncommon - snide and snippy remarks often find their way into people's charts. Be prepared if you ever get a copy of his medical notes.
I would suggest calling Headway and asking for recommendations in your area, or try to get hooked up with a support group, as people share about docs who are good, and ones to avoid.
A professional in the area said the standard response if you run into someone who is like that, is to thank them for their time and leave and don't go back. If you have to mention them to another professional, just say 'so and so was not helpful'. It says it all, and you come across as very professional, knowledgable, and someone not to be put off. (Note I said 'have to' - in most cases best not to bring them up at all. They do tend to know each others biases, so 'not helpful' is enough said.)
Ok, those are my few coping tips for this sort of thing.
It's tough to be left with it all, bless you (seriously bless you) for being willing to do it.
When you speak to Headway do not forget to ask for support for yourself - counselling, respite, help with anything at all available? etc. You matter, too. Self care is necessary, not optional.
Leaf x
Painting-girls right phone Headway and definitely ask for a second opinion ,to say he can't do anything and won't be able to do anything you've seen improvements this 19 months and all because of your patience and resilience could you speak to your doctor is there any support you could have just for some respite for you,you are in my thoughts❤️
I have been informed my local Headway do not provide counselling, I would need to go down gp route for let's talk. I never knew this. Informed were not priority with headway could be next year maybe. Again the unimaginable what the past 19months has been with no physical support, no family, no friends just rolled sleeves up and time we know here we are.
The only support I've been given from GP is antidepressants which i refused and being signed off which I refused back in April/May 2021 when living grieving/ambigious grief hit me.
Yes he had medical notes we never seen pages of it in letter format.
Hmm...I wonder if you could specifically ask to see a neuropsychaitrist? Everyone's experience varies if course, the one I see has been the most helpful person in helping me access resources , though there is no Headway where I live.
I am also wondering if there is some sort of brain injury society in your area you could contact on your own? I know HopeFND has its own UK version... you could try there, too
Yes all this running around is exhausting and it seems to be what we need to do when we are falling through the cracks...
Just keep going m'dear...find some flowers to smell along the way..literally...aka.do nice things for yourself, even if they are small.
Best wishes, so sorry thimgs are so frustrating just now...
Hi NB, rather than your local Headway, I meant to just ring the national Headway helpline for immediate support and information about what you can do next (on the 0808 800 2244 number in working hours) they will know what your next steps are now and can advise you - probably to get a second opinion.Hugs xx
Morning NB
I was so sorry to read your post and angered on your behalf. You seem to be nothing short of super woman and that has’t been recognised. I don’t know how you are coping. Ranting on here is at least one coping strategy I’ve used myself. As for the Neurologist 😡!!! I have learnt over the past 10 month since my sons hypoxic brain injury that many many NHS staff are angels but some just let the side down. Arrogance, rudeness and shear heartlessness have no place in our society let alone in a caring profession.
Please consider raising your concerns to the Trust. It may help but it may make you feel better. Calling this behaviour out is important but you probably have plenty on your plate. My son had a consultant whilst he was misplaced on a stroke ward who I took ages to get hold of only to be told she had 33 other patients and didn’t have time to talk to me about my son. This was one of the more practical issues I raised with the Trust. Nothing concrete to complain about but I asked that she reflect on her manner and consider the impact of her attitude on us at a time when our hearts were breaking …….. I haven’t had a response to my overall issues yet but I felt much better knowing I had expressed myself.
My heart goes out to you. Coping with what you are going through is so so hard without having to deal with the impact of this professionals appalling bedside manner. Take care of yourself and let us know how things are going
Poor you - as some of the replies say, you are certainly superwoman. I too got stuck in a ‘specialist neurocare’ Facility - more like neuro don’t care as it turned out so I formed my own escape committee and came home and got proper help. I joined this because of fatigue issues and one message that has come through is that besides pacing it is important to factor in ‘me’ time. How old are your children? If there is no support group in your area perhaps you could instigate on? As if you aren’t busy enough already! Sorry - don’t mean to add to your burden when it seems you are already doing a great job. Maybe headway can advise on this? There must be others in your area who have been distressed by the same medics.Good luck.
I can't add to what has been said by others. It saddens me to hear how the neurologist has treated you. Seems a common factor, I too had the experience of a less than tactful, less than caring neurologist. He didn't make eye contact, and was writing up his note's as he spoke. That was his first mistake, the second was seeking support from his superior, who explained to him why I was so angry.
I know that you have not accept your GPs suggestion, but it maybe worth reconsidering. You are juggling so much, being signed off might give you a little breathing space, even if it only gives you a few hours of 'me time' to gather your thoughts.
We are all here for you, your husband, and family. 🍀
Could you ask your GP to arrange for a domiciliary physio or OT to visit? They could help by offering advice which might make day to day activities easier. And at the very least someone to discuss your problems with. They could also help with basic exercises for your husband which might make it easier to care for him.A phone call to headway would probably help. I did that this week and it has led to a counselling appointment on the phone next week. Google IAPTand type in your area - this is a free service.
Seems good but as yet untested by me!
I have just finished a book by Norman Doidge called ‘The Changing Brain’ Which is about how the brain repairs itself (nurtoplasticity) and in your husband’s case new neurones would take over the space and also how other neurones change function to do the things you need to do. Very new and exciting research and good cause for optimism. Until now it was thought that the brain did not have this capability.
In May brain injury team OT wouldn't take him on, behaviour unpredictable. But we are doing well in this area and not needed, we've worked really well on this and I smile typing this thinking about another area we have achieved, there's so many more.
I have been invited to headway next week, this be my first actual support. I haven't even done carers assessment as I only got one hand of experience actually verbally talking about this and know I need someone holding me up going through anything it just haunts me,. I have literally had no one to talk too in 19months not one person, family disappeared at 9wks, friends followed after. So just me, husband, two children, so isolated,. I joined social media in summer to help explore but none locally, only headway so I've been holding out all this time.
Brain injury team have arranged meeting for Monday afternoon to discuss what happened Tuesday. I'm having the rest of the week off work which I have requested occupational health time to recharge and control tears. X
Dear NB,In tears reading your post, you are such an amazing strong woman. Appalling that you were treated like that. Your husband is so blessed to have you fighting his corner.
My daughter remarked to me the other day its like we should really be the doctors, we seem to know more than they do.
This, after consultant and his colleagues, finally settled back on 'locked in syndrome' diagnosis for my husband again, after kept swaying back to the 'vegetative state' one.
'Thankyou' and leave as soon as possible as suggested, I too am learning that may be all you can do at times, otherwise it just drains your energy trying to get your point over and some don't want to hear.
However there are still good, wise, helpful professional people out there, hope you can link up with one soon. Keep going...we are all rooting for you💗
In my experience, fatigue can only be managed. Mornings are best for my Husband. Afternoon activity can be too much for him. We went to the opticians not long ago in the afternoon and he dozed off while there. He also becomes more confused if he can't get the sleep.We have our own system of dealing with it and I doubt there is any kind of cure for it.
Medical staff are a real lottery. Some good, some useless.
Hi. You could contact your local Patient Advice and Liaison Service,(PALS.) Just Google PALS and include the name of your area in the search. They support patients and their families who have difficulties with NHS services.
I felt a range of emotions on reading your post but ultimately sadness that you keep being so let down by the ‘professionals’. You have been caring for your husband brilliantly and to have all your hard work basically disregarded is a disgrace. I hope you can put this Neurologist’s remarks behind you, reflect on you and your husband’s achievements of which you should be proud.
Whilst having these few days off work please be kind to yourself, rest and enjoy your family.
THIS turns my stomach. I'm flipping horrified. What a way to treat someone. What to they mean he has a "hole in his brain". You're not an idiot. You have been there all along you know all the things! More than they do! What a comment about vegetative states! Well he's not in a vegetative state...so how can you help us? Absolutely appalling way to be treated. And trust me I know about the eye rolling and the "you don't know anything YOU didn't study medicine. Oh my word I'm fizzing, so you must be beside yourself.
What's the next step. Are you going to put in a conduct complaint?
We have meeting Monday and I've been contacted by Headway today.
Husband broken, but I can never be repaired either. I just need to recharge, hold on how he has exceeded all expectations and beyond. But those words, just bloody replaying and it's causing tears to flow uncontrollably.
Guess the tears definitely have a place. Let them happen. I'm so sorry you've had this added to your mental loaf. It's not a fair or acceptable way to communicate with people. Shocking. How are you feeling today?
I feel no different and totally wiped out. But anxious now on Mondays meeting. What if health close ranks, will that horrible neurologist have print in husband's records, will I actually be cc in letters of him complaining about other professionals, as medical letters he had, we never seen.
Just horrible questions whizzing around that shouldn't be whizzing around , like the head whizzing thoughts wasn't enough. This is just too inhumane for a body and mind to take. However I will plod along like I have done, that's all I can do.
Take a deep breath and be your brave self by treating tomorrow as a fresh start - we can't do anything about the past, as another very inspirational lady told me last week - all any of us have is today.
I know it's really very hard, but try not to let those whizzing thoughts get a hold on you, and just do what you've been so good at this terrible and traumatic last 19 months, and just deal with what physically presents itself tomorrow,
Hugs and 🙏 for some better outcomes for you tomorrow, or at least a clearer path of support for you. Let us know what happens, we're all rooting for you xx
You know how well your Husband has progressed. Don't cry over these people. They are simply not worth your tears.Try contempt instead. Much more satisfying x
I so feel your pain NB... sending a big virtual hug your way.Not sure where you live but there must be a caring for carers team somewhere close to you 🤔.
They can offer you respite, help for the kids and support you through problems with other professionals. If you haven't already done so Google caring for carers in your area. X
So sad to hear of your situation. Caring for a loved one with a brain injury is exhausting - and I can only imagine how isolated and frustrated you felt going through lockdown without support. I can really identify with your struggles and the toll that the constant battling is taking on your own health. After a very shaky start and devastating prognosis for our son, we are now (eight years after his brain injury) in a good place.
Very few of the systems we rely on are working properly at the moment - and not being able to obtain guidance from professionals at this time can induce even more frustration and panic. It’s really important though that you keep sharing your thoughts and talking to others who understand. There are some amazing people on this site.
There are also some great professionals out there but you can also come across the odd ‘professional’ who behaves in a highly inappropriate and unprofessional way.
You are going through extremely difficult times and yet continue to fight for your family. Try to take a moment to think about the important things YOU are achieving. It might feel like one step forward and three steps back most of the time but at this stage in brain injury recovery you just have to keep ‘chipping away’ and keep breathing!
You are doing a wonderful job - but you do need to take care of yourself and grab whatever support is offered. That doesn’t mean you will lose control. Please message me if you would just like to talk things through. Most importantly, focus on the moments of the day that can be just for you. X
So 6weeks has past. Still no answers. That inevitable nervous breakdown I told I would have when I bought my husband home did catch up with me 9th November not out of woods yet, but getting there x
Stay strong like you always have and you have done it all on your own. I will keep you and your family in my thoughts for a far better year for you all next year
It still feels it all happened few months ago with husband and to think we're nearing 2years and managed solo still brings shivers, doesn't feel real and sounds too bizarre retelling our story that it seems unimaginable, been told its unheard of and I won't meet anyone who's loved one been home so early with PTA with such traumatic brain injury during covid pandemic.
I feel so proud of what we've done and continue to do, but also insight how abandoned we have been all round x
You definitely should be very proud of yourself, husband and family. You shouldn’t have had to struggle through and it has inevitably took its toll on you. I hope you can all enjoy the Christmas period without too much stress.
Like you I can’t believe how time is passing so quickly we are sixteen months now. When our son had his cardiac arrest and subsequent brain injury I felt the world had stopped in those early days. Now each day/week/month goes so quickly as always something else that needs to be faced. Here’s hoping life can settle down for both our families and we can look forward and not back. Take care. Nanapal x
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